Menu

media

We had an opportunity to share part of our story in a way that I felt I could finally add something to what seems to be an avalanche of autism dialogue. I can’t ignore the conversation; I learn from courageous and brilliant people every day. I cannot afford not to listen. But sometimes it’s hard to share – people we know with typical children (Is there such a thing? Discuss.) think we are unlucky, but we know how lucky we are. Context is everything.

At the turn of this century, out of necessity, we took a more novel approach to addressing autism because we saw gastrointestinal symptoms we felt we needed to ameliorate; it turned out to help us address autism as well. Karyn Seroussi was smart and brave enough to write a book about her boy, Miles, who sounded a lot like our boy. With her book as a guide, we collected data, we tried only things that would not jeopardize our child’s health, and when something didn’t work we stopped. But the fact is that a lot of it did work, and I remain mystified as to why people who treat their child with diet and gastrointestinal treatments are vilified by some parents and physicians.

Even my beloved mother accused me of using dietary intervention as a way of denying my son is autistic. She said that removing foods from his diet was a way of withholding love. But she was thousands of miles away; she did not see what I saw, she did not live what we lived. We had spent his earliest years first trying to figure out what was wrong, then in learning it was autism, in trying to figure out what caused it. But it soon became clear that what we needed to do what help the boy in front of us in whatever way we could. That has not changed.

So the years have brought an ebb and flow of interventions: gluten-casein free diet, yeast treatment, removal of artificial colors and flavors, soy, high-pectin fruits, and bananas. That’s what worked; it improved his health, and with improved health came the strength to deal with autism. After the first year, my mother heard the results and apologized; it was the most important parenting lesson of my life. We tried lots of other things with inconclusive results, and we went for long stretches without doing anything new at home while we made adjustments to his program at school. We have two other children in need of just as much love and attention, and balance is important to us. We resisted, not always successfully, letting autism take over our lives.

So when, in December 2008, Dr. Martha Herbert gave a talk at Massachusetts General Hospital about the whole-body approach to autism we listened, mouths agape, at someone who told our story without ever having known us. The story of that night and the days that followed is another post, but it led to our cooperation with Karen Weintraub on an article in the Boston Globe in March 2012 (it’s the same one linked in the first sentence of this post). We’d had other chances to be in the media but the central issue always seemed to point toward anger and controversy over schools and treatments – worthy causes, always, but not ones that merited public exposure of this particular family. Is that selfish? Maybe, but to me, at those moments, I felt only protective, and that sense of privacy always outweighed any sense of the greater good of going mainstream media.

Karen, an eminently principled journalist and amazingly reasonable person, convinced me that we could preserve our privacy and tell the most unique parts of our journey in a way that did not make us look like every family should do what we did for our son’s autism. I heaped her with details and diatribes long dormant over the ten years since we began interventions. She graciously accepted my four-page answers to yes or no questions. She sifted through it all and, after putting up with our constant hand-wringing about privacy, composed an article that leaves us very proud to have worked with her.

Consequently, during Autism Awareness/Acceptance month, sometimes I feel like we are the hurricane, sometimes we are the eye. It changes minute by minute. But if one reads though the rest of this blog or it’s broader parent blog, LettersHead, you will not find evangelizing about causation or our intervention strategy – there are plenty of more useful places to read about that. For better or for worse, all I can bring myself to do is piece together the past in hopes that it will light the way for the future. And yes, sometimes that light turns out to be blue.

Ever since the 18th birthday earlier this spring, I’ve been in a state of emotional turmoil. It’s only a slight exaggeration. Now I try to make some sense of a teenager’s room that runs the gamut from Winnie-the-Pooh to Scooby Doo with everything in between. It’s a collector’s dream and a parent’s nightmare. I’ve learned the hard way that throwing the wrong thing out means I will be hounded eventually to replace it – it could be five weeks or 5 years from now, just long enough to make what cost me $1.99 in 2003 now cost $67.99 on Ebay today. I know parents who have purged their house of everything Thomas and Pixar to help their kids become adults but my problem is that I really am loath to replace Toy Story with the Man of Steel. To me, that’s just another kind of arrested development. More importantly, he’s not interested in that stuff – he sleeps soundly through superhero movies on a regular basis. He loves what he loves.

And the books. Which ones will he ever read? How can we know what will prove useful or interesting, just by waiting patiently for him to notice the ones placed where he sees them every day? To get rid of the easy readers seems mean, to get rid of the more advanced books seems pessimistic.

Will he look beyond the action figures to the books behind them? Maybe.

Downstairs are the bins of paperwork that requires filing or tossing – one for school, one for insurance, one for general ASD stuff, one for transition, one for keepsakes and artwork that show developmental progress, or the lack thereof. But I only end up weeding things out I know are redundant – I just don’t know when a school or a court will need to see what we have and I’m afraid to get rid of something that could be a key piece of evidence of … I don’t know. And every bin or toys or papers brings a flood of memories and emotions that don’t want to stay on the shelf where I keep them. I am trying so hard to focus on the future that sifting through the past seems like a bad idea just now.

So I guess I’ll stick with The Wizard of Oz and The Sound of Music – at least they are live action – and wait a bit longer for the moment when we can at least move some stuff up to the attic. And we will know soon enough what schools, doctors, agencies and lawyers require and then, maybe then, we can let go of at least some of the past.

Renewal and irony and reality all converging on a single spring day. Melting snow, green shoots, black earth. The extremes of New England’s seasons are the metaphor I cannot ignore.

I tend to roll my eyes on the awareness month for anything, and even more so for Autism Awareness Month because I’m conflicted about foisting upon the world an awareness of what I consider to be our private business. But making the world more navigable for our boy is part of that business and thus I need to try to find ways to use the opportunity that autism awareness month presents without seeming insufferable and needy (good luck with that, I know). And what is a blog for if not for saying something that I think might be worth reading? I ask myself all the time why I do this and most of the time the answer is that I write about it because I can’t not write about it. From my perch, autism awareness is as much about the journey and the humor and poetry borne of the angst and the crazy – it’s not nearly as helpful as what others are contributing to the dialogue, but it’s what I have.

So in a nod to the everyday awareness that we have of autism, I’ll post something every day (an essay, photo, or link to those who are saying it better than I) in April in hopes that something and interesting and good will come of it.

We are movie people. When our kids were small they didn’t have special showings for kids and people with autism like they do now. I think it’s great that they do, but we’ve kind of developed own set of tools and rituals that get us through the movie experience. For many years our boy spent every movie happily on my lap, with my arms wrapped around him and his hands firmly over his ears. That was how he managed the sensory overload of a loud movie. When he moved to his own seat he would do one of two things (after eating exactly half of his popcorn and giving the rest to Dad), lay his coat on the armrests and go to sleep half leaning on me and resting on the coat, or put his head on my shoulder and have me put my hands over his ears while he watched. I am in awe his use of sleep as a coping mechanism when he is overwhelmed or distinterested. How many people do you know who can sleep soundly – snore, even – through The Avengers, Thor, Iron Man 2, and 8 innings of a Red Sox Game at Fenway Park?

It’s been a lackluster winter for family movies (with the notable exceptions of Life of Pi and Lincoln, both of which he sat through, riveted and perfect) so we haven’t been in months. Finally, cabin fever drove us out of the house to see Jack the Giant Slayer and this time the boy and I found ourselves watching shoulder to shoulder as I waited for him to lean over and nod off as the beanstalk wound its way into the sky. But the lovely girl and the prospect of romance kept him awake this time, and he kept whispering to me “Do you think Jack will marry the princess? Are they in love? Are they going to get married? Will her father the king approve?” Usually the only questions I get are whether this is a short, medium or long movie, so the specific plot questions and the arm tapping and hand squeezing and his turning my head to look at him when he spoke to me were all new in this setting, and most welcome (but his brother did move one seat down).

If you sit in the front you can put your feet up and no one cares.

But the best part was when the grotesque giants made their first appearance and I instinctively raised my hand to cover his eyes and at the exact same moment he did the same, covering my eyes with his hand. There we were, side by side, with our hands clapped firmly over each other’s eyes, trying to keep each other from being scared. He knew it was funny, too, even as he kept his hand firmly in place until we agreed that we could look at the screen again.

I know it’s a milestone, whatever just happened there. It’s a new level of reciprocity and sophistication, a point at which he now wants to take care of me the way I try to take care of him. It’s what we wanted and worked for but not necessarily what I expected to happen, because at some point expectations get to be counter productive when you are raising kids, whether they are typical, autistic, or anything else. Goals are essential, but expectations just get in the way of seeing and responding to what is right in front of you, and if you are lucky someone will put their hand over your eyes during the scary parts.

I don’t want to but I have to weigh in on the Sandy Hook tragedy. I doubt we will ever truly know everything that led that young man to do what he did, but I feel the need to reiterate what the Autism Society of America has already said: that mass murder is not a symptom or a behavior of autism. His brother mentioning autism in a description of the gunman doesn’t mean there is a causal relationship between what happened and the alleged diagnosis of autism, it only means – maybe – that he was a person who may have needed more support than he was getting. In today’s America, that could describe a whole lot of people, the vast majority of whom have not opened fire on anyone.

But I am appalled that the ability to do just that – open fire – on anyone, anywhere, is seen as a founding-fathers-given right to Americans. We have lost our understanding of what gun safety is and the value of a good background check – which in this case would have done little good, but that is not true of some other events in this year of seven (yes, seven) mass shootings. But limiting the number and type of weapons available to a single individual might have made a difference in the scope and horror of this event.

Don’t let the media – or anyone else – turn the tables on the real issue and blame a disability instead of political cowardice on the fronts of health insurance and gun safety. I join the chorus of voices calling for increased gun safety and a stronger mental health safety net for all Americans.